hi,
a lot of you already know my 10 month ordeal trying to get a diagnosis, i was dxed with everything turns out i have pet, and probably had an inner ear virus last fall. i was dxed with everything under the sun, you must be insistant and get all of the proper tests.
mieneres is often misdiagnosed,
dont forget about the eustachian tubes, they can cause major problems
also sscd, is a condition where bone has eroded in the inner ear bone, the vemp test and a special ct look for this.
there are a lot of things that need to be looked at so dont settle for anything but all of the tests and a complete diagnosis. good luck, lib

What is pet???

What is pet???
patulous eustachian tubes, its awful! the e tubes are open, look it up.lib

Hi Lib, soooo glad that your rounds of wondering what in the heck is causing your symptoms are over! Simply not knowing WHY to me is half the difficulty.

Hope this is you on the start of getting better!

~Ilia xxxxxxxxxxx

thanks ilia,
the only hope for me is surgery, cant get the first ear done till aug and will have to wait 2-3 months for the second, this procedure is new so i am praying it will work. got the best dr in the world on it tho! take care! lib

Hi Lib; read a lot of your posted notes yesterday when i discovered this site--nice to know that I can talk to others with the same diagnosis since I have had this for years and never met anyone who has it. so strange to explain to people that your hearing is fine but it is difficult to talk because of the autophony. Most people that have problems speaking have had strokes or vocal cord damage so it is a wierd concept for people to grasp. Have found there is little information since it is listed as a rare disorder and even national organizations dedicated to rare disorders have little to offer in the way of news or research or available treatments. I have been dealing with this for years and that involved the problem with getting an accurate diagnosis like you mentioned. *I had not heard of the sscd or Vemp test and assume when you said ct that meant cat scan. I will go look up those and get more info. Did you ever have surgery and which one--how did it turn out? Thanks for sharing. The best help is sometimes through other patients who live with the same symptoms--even the doctors have a hard time understanding what we actually feel and how frustrating it can be on a daily, 24 hour basis.

hi petpeeve,
i will be having sugery in august. how many years have you had this? are you noise sensitive at all?
the other tests are to rule out sscd. can you breath air into your ears?
what do you think caused yours?
where do you live?
i will let everyone know how it goes! lib
also do you have it in one or both ears?

Hi Lib: Thanks for the quick response --we must be strolling through the posts at the same time. I live on the west coast. I have had very minor symptoms of fullness for over 10 years but only in the last 5 years has it become so severe as to affect my lifestyle. The primary change is that speaking in public is almost impossible because I have to raise my voice to a level that sounds like shouting for me but is probably just normal for everyone else. The doctor had asked me about 3 years ago is I was affected by "ambient" noises and I said that my hearing test was perfect and I listened to the radio and TV and music and none of that bothered me. He said I was lucky because a lot of people eventually become sensitive to the noises around them. In the last year I have noticed that. If I go to a movie now with my husband the theatre sound is so incredibly loud that I wear earplugs and it is still loud enough. I have no idea what caused it. I have read that the only cases that they see a direct link between PET and a cause is rapid weight loss due to chemotherapy or anorexia/bulemia. None of those apply to me. I had one doctor say that since I was thin I should try to gain weight and another ENT said that was ridiculous because by the time i gained enough weight to plump up the tissues around the ET I would be as big as a barn. I agreed with him that it didn't make sense. My weight has always been stable anyway. But since most of us as PET sufferers will try just about anything I decided I could suffer through a couple of Krispy Kreme donuts everyday in order to put on 15 or 20 pounds. I did and enjoyed the process but it had absolutely no affect on the PET problem. Did you see my note yet to you about the hormonal nose spray? I would like to hear how that worked for you. I am assuming that it didn't help if you are still going forward with surgery. I hope for the very best and a 100% cure---wouldn't that be grand! How has this PET affected your speaking? Can you talk in restaurants where there is a lot of background noise? Thanks for sharing.

oops--forgot to answer two of your questions lib--got so chatty I forgot where I was. I wanted to tell you YES, I can inhale and feel that the air is going directly into the ET but that has gotten better in the last year for some unknown reason. I wish I knew why so I could pass on the answer to others. It was a horrible feeling besides just an irritating noise with each inspiration. It is only measureable to me in the left ear that is fully open and the right is that is classified as "floppy" is not aware of the inspiration sounds or the pressure as much. How about you---do you have that feeling that your eardrum goes in and out all the time when you breathe? I can't remember if you are the gal that said she wore earplugs but I read that last night and I had kind of discovered the same thing by accident. Over the years when I spoke I noticed when I was standing talking to someone that I unconciously stuck my finger in my ear. So I tried ear plugs and i found that just having that block seemed to help. I don't understand what is actually going on but I can only guess that the constant movement of the eardrum in and out is annoying and the reason I felt like the ear pressure was worse after talking. I rarely talk (except typing--that is my social outlet these days) but when I do so for more than 10 minutes it feels like I have a dull very mild earache. But with the earplugs I think the movement of the eardrum is restricted and it just helps. I did upgrade to the soft flesh colored ones and got rid of the neon orange ones that resembled Frankensteins bolts on the side of his neck. Tell me more about your surgery if you have time before going in. I will be thinking about you and hoping for the very best. We need a success story in this group and since you are a veteran on the board I am sure a lot of us listen carefully to your experiences and HOPE.

hi petpeeve,
i am going august 9 for the first ear. the nose drops have not helped me either, i was really hopeing they would. both of my tubes are open but not wide open. i will be having cartlidge and alloderm inserted into the lining of the eustachian tube by a doctor in boston, i live in virginia.
there is also a place in tenn that puts silicone tubes in the e tube.
i am sensitive to outside sounds pretty bad. my eardrums move when i talk and cough, turn my head. how do you cope with this, do you work?
also acid reflux can be a predisposing factor. i am thin also but was told even if i gained pounds it would not go where i need it.
so i am praying that this surgery will take care of this problem as it is ruining my life, job everything.
how did your pet start? thanks lib

Hi Lib: Looks like your surgery is around the corner. I haven't read anything about the aloderma and cartiladge placement but that sounds better than the silicone since I have read some negative things about that. Do they use your own cartiladge harvested from some other place on your body? Is it a permanent closure of the ET or something that is flexible that would allow you to Valsalva (the blowing of the nose while pinched to force air into the ET to open it and pressurize)? I was never able to do that for years. People always told me to try it since my ears felt plugged but it seemed to make mine worse. No wonder--the tubes were already open and full of air. I guess that is one of the tests used to determine PET also---a sluggish Valsalva reaction.
You asked how my PET started and I am not sure what caused it but it started worsening about 5 years ago to the point that I felt a pressure constantly inside the left ear and a feeling of being overinflated in my entire head. I don't really notice the dizzyness unless I am sitting perfectly still and quiet like in a classroom or lecture environment and then I feel it. I have only had a few occasions where it also included a little nausea. I have a busy life so with all that constant movement and activity I don't notice the vertigo as much as just feeling like I have a head cold that has moved into my ears. I have felt that way for years with no relief.

I have allergies and a stuffy nose all the time, tried allergy shots for 2 years with no results. I had taken shots as a child and they worked well. I have enlarged nasal turbinates (those shelf like filters in our nose). They filter all the junk out and if you have allergies and they tend to work overtime they do grow and cause some blockage in the breathing passages. I noticed that my PET seemed markedly worse after I had the turbinates reduced by diathermy. My breathing was a lot better for a while. Don't know if there is any relation. ENT said that septal repair would help me get more air in through my nose but that just means more air rushing past my wide open ET at this point. I am more concerned about the PET than anything else and breathing better would be nice but if it means worsening the PET, forget it---I will live with a blocked nose instead. And yes, I can understand your feelings of how much it impacts your life. Such a little piece of our anatomy--4 inches of tube that is stuck open--who would ever guess that it could be so frustrating and have such an impact on social interaction. Are you able to go to loud places like a restaurant? I can go but I can't speak loud enough for anyone to hear me so I am basically voiceless in settings like that. Over the years I just gave up---what is the point if you can't say anything or you have to write on a piece of paper. Do you have the same difficulty talking in public settings? Goodluck Aug 9th. I'll be looking for a note that says your feeling fine and back online.

hi petpeeve,
the cartlidge will be taken from my ear, the little flap in front of the canal, and alloderm, thats cadaver tissue will be placed in the pocket. it is flexable from what i know it does not block the tube permanentley. it is to build the e tube wall up. i dont go anywhere, i hate the noise and dont like to talk so no resteraunts for me, but i am praying that will change soon. i will need to get my other ear done about 2-3 months later.
where did you read about the silicone?
do you have acid reflux at all? how many years have you had this?
i dont cope well at all with it, i am severley depressed.
so i guess you do work?
i also have a snapping sound in my face when i talk its the tube opening and closing, its very distressing! thanks lib

Hi Lib,

I have read many of your posts. I am a comrade in misery with recently diagnosed PET. I have been told by ENT doctors at Mayo that the cause was weight loss. I lost 15 pounds without trying over two years. Did you have weight loss prior to your diagnosis? Were you given any other possible causes? I am working on gaining weight. Have you read or heard anything regarding weight issues?

Did you try the Premarin nose drops? Did you have the snapping sound behind your nose at the onset or did it develop later? My symptoms started in November with the clicking, popping noises and sensation or fullness and pressure in the ears. I also hear my heartbeat.

I have also been diagnosed with TMJ, which was aggravated by a recent thyroid surgery. Have you had any issues with TMJ? I now have the sound of glass breaking and loud snapping behind my nose when I swallow. These sounds have gotten progressively worse since my surgery 3 1/2 weeks ago. I had a tympanogram after my surgery to measure air movement to try to determine if I had PET in both ears. Have you run across any info on symptoms worsening after tests like this? Mine seem to have intensified since this test.

Your upcoming surgery with Dr. Poe sounds promising. How did you get evaluated by him? I know he works in Boston. Any info you can give me about how to contact him would be greatly appreciated.

I am married with two kids. I have been very non-functional since this started and feel I must get some solutions before I go nuts. I am a substitute teacher and had to quit working.

I hope joining this discussion group allows me to gain info and monitor your progress. My hopes are that your surgery will be immensely successful and that I can someday join you in the land of functioning human beings again:)
I look forward to hearing from you.

Your fellow sufferer, SCP

hi scp,
oh do i know....that snapping sound makes me want to rip my face off!
as for the wieght loss, i was told it could have been a contributing factor, but even if i gained back the wieght it would not help, and i did not lose much. being thin, acid reflux, sinusitis and all the meds caused mine.
yes i have tmj but i was told it is a seperate issue.
i have one child and i am a hairdresser so you can imagine this is destroying my life as well.
per the rules dr. dennis s poe, boston mass
look it up on google or call 411
do you have it in both ears? where do you live? was mayo able to offer anything at all? i cant beleive your the first person i have come across with the snapping. god help us!
there is the shea ear clinic also, they are in tenn.
how do you cope with this? thanks lib
yes i have the estradiol nose spray, not helping me tho.

Hi Lib,

I have lots to discuss with you. At Mayo, I was told my best chance of fixing the PET was to gain weight. I had unexplained weight loss, which was ultimately believed to be caused by a thyroid problem. Over the last year, I lost 15 pounds - about 12% of my "normal" weight. I am trying to gain it back, and have put 7 pounds back on. So far, no improvement in the PET symptoms.

I am very thin also. I had acid reflux with an ulcer long ago (in about 1988). That was my only bout with it. I had strange, constant, sinus-type infections the winter of 2003. The PET started Nov. of 2004. How did the meds contribute to your development of PET? Were they antibiotics?

Do you believe your TMJ is a separate issue? I suspect it could be related to the PET. I wonder if TMJ could cause PET or PET could cause TMJ. What do you do for your TMJ?

I have PET in the left ear. As for the right ear, I sometimes think I have it there too but to a lesser degree. Other times I think I don't have it in the right. Do you have it in both ears?

Have you had a consult with Dr. Poe? What did you think of him? Do you know of anyone with PET who had the surgery with him? Was it successful? Do you have any concern about his use of cadaver tissue? Couldn't he use the patient's own tissue from a tissue graft?

I live in Minnesota. Mayo Clinic told me the first step was to gain weight. They have seen only 5 people with this. All 5 gained weight. It worked for 1 person. Mayo describes it as the shrinkage of fat pads surrounding the eustachian tubes. They said the second step was to try Premarin nose drops (they no longer use a spray). This is a form of estrogen. It could thicken the mucus lining and thereby sort of build up something like scar tissue. They said the chance of this helping was very doubtful. I have not tried it yet. Are you still trying your nose spray? The spray has not made the problem worse, has it?

One doctor at Mayo said the next step would be ear tubes. They told me they are very hesitant to do that because the tubes didn't help any of the other people and they could make the problem permanently worse. One doc at Mayo Minnesota called the Mayo clinic in Scottsdale, Arizona. They've had 3 patients with it. They all tried weight gain and ear tubes. One patient was helped with ear tubes (I doubt that patient really had PET).

According to Mayo, the next step used to be injection of a fatty material directly into the eustachian tube. They never did this procedure but it was done at other clinics across the country. This was a while back and is no longer being done because of complications of operating directly in the eustachian tube area with the location of the carotid artery nearby. Several patients died during the surgery when the carotid artery was cut or damaged. They also said some patients were made permanently worse by this.

Mayo described one final option that they said was extremely risky and could also make the problem permanently worse. Nerves from the eustachian tubes run to a bone in the back of the throat. This area acts as a pulley system, allowing the eustachian tubes to open and close. The procedure is to shatter the bone and thereby inactivate the pulley system, which should allow the eustachian tubes to close.

While any info is good to have, I can't say that I really trust the docs at Mayo. They don't seem to know much about PET.

Do you have any info on numbers of people who have PET? Mayo said it is extremely rare. Have you heard of anyone else trying to gain weight to fix the problem?

Have your symptoms changed over time or gotten worse? Did you have the snapping problem at the start of your PET? If not, how long have you been snapping? I am devastated by the snapping. It is the worst thing about PET. I have only had the snapping for a few weeks and don't know how I will live with it. Mine sounds like metal snapping behind my nose when I swallow. As for coping, I'm not doing well and can't imagine living like this the rest of my life. I saw on-line that someone said (maybe it was you) that this sound comes from the eustachian tube trying to close. While it is horrific, could this mean the body is trying to fix the problem on it's own? Could it be some kind of sign of hope? Or is it just a sign of the symptoms worsening? I suspect my snapping was caused by the tympanogram or a result of the thyroid surgery. Have you ever had a tympanogram or other tests that you felt worsened your PET? The results of the tympanogram showed that i have PET to a very high degree in the left ear. The right ear is questionable.

Do you have any experience with either the PET or the TMJ with the sound of glass breaking? I have a friend with TMJ. She has the sound of breaking glass when her TMJ is bad.

Have you tried tubes in your ears? One of the Mayo docs said tubes change the situation for people with PET. For some, tubes make it worse. For others, tubes make the PET different and possibly more tolerable.

Have you found any things that you avoid because they make your PET worse? Mayo told me to never use decongestants, sleeping pills like Unisom (they have a slight decongestant in them) and to be careful with pain medicine. They thought Tylenol might be okay but advil, naproxin, aleve could be trouble. I have found that I cannot tolerate Tylenol, it makes my ears worse. Aspirin is the only one I will use but I have to be desperate. Even aspirin makes my ears worse. I now wonder if any medication can potentially make my ears worse. I know for sure that the pain medicine given to me in the hospital for my thyroid surgery, made my ears terrible.

Have you found any things that help your PET? Or any things that help you cope better? One doc at Mayo said drinking lots of water would help. I'm not sure on this.

One of the Mayo docs told me PET can affect your speech. Have you heard of this?

Have you heard of anyone losing some of their hearing from PET? Is there any risk of this with Dr. Poe's procedure?

I read on-line that one man believes his PET is from Botox injections in the roof of his mouth. I had Botox injected in eye wrinkles for cosmetic reasons. I had this done 3 times over the last 2 years. I wonder if this could be a factor. The last Botox I had was the middle of November. It takes 2 weeks to be fully activated. Two weeks later, I had PET. All of the ENT docs I have consulted with say there is no connection and that Botox is safe. I am not convinced.

Do you have any other weird symptoms elsewhere in the body that you think could be related to your PET?

How long have you had PET?

Have you had anxiety from it? I sure have.

Have you been to the Shea Clinic? What do they do for PET?

Thanks for discussing all this with me. It sure is great to have someone else who understands...

SCP

Hi Lib,

I have lots to discuss with you. At Mayo, I was told my best chance of fixing the PET was to gain weight. I had unexplained weight loss, which was ultimately believed to be caused by a thyroid problem. Over the last year, I lost 15 pounds - about 12% of my "normal" weight. I am trying to gain it back, and have put 7 pounds back on. So far, no improvement in the PET symptoms.

I am very thin also. I had acid reflux with an ulcer long ago (in about 1988). That was my only bout with it. I had strange, constant, sinus-type infections the winter of 2003. The PET started Nov. of 2004. How did the meds contribute to your development of PET? Were they antibiotics?

Do you believe your TMJ is a separate issue? I suspect it could be related to the PET. I wonder if TMJ could cause PET or PET could cause TMJ. What do you do for your TMJ?

I have PET in the left ear. As for the right ear, I sometimes think I have it there too but to a lesser degree. Other times I think I don't have it in the right. Do you have it in both ears?

Have you had a consult with Dr. Poe? What did you think of him? Do you know of anyone with PET who had the surgery with him? Was it successful? Do you have any concern about his use of cadaver tissue? Couldn't he use the patient's own tissue from a tissue graft?

I live in Minnesota. Mayo Clinic told me the first step was to gain weight. They have seen only 5 people with this. All 5 gained weight. It worked for 1 person. Mayo describes it as the shrinkage of fat pads surrounding the eustachian tubes. They said the second step was to try Premarin nose drops (they no longer use a spray). This is a form of estrogen. It could thicken the mucus lining and thereby sort of build up something like scar tissue. They said the chance of this helping was very doubtful. I have not tried it yet. Are you still trying your nose spray? The spray has not made the problem worse, has it?

One doctor at Mayo said the next step would be ear tubes. They told me they are very hesitant to do that because the tubes didn't help any of the other people and they could make the problem permanently worse. One doc at Mayo Minnesota called the Mayo clinic in Scottsdale, Arizona. They've had 3 patients with it. They all tried weight gain and ear tubes. One patient was helped with ear tubes (I doubt that patient really had PET).

According to Mayo, the next step used to be injection of a fatty material directly into the eustachian tube. They never did this procedure but it was done at other clinics across the country. This was a while back and is no longer being done because of complications of operating directly in the eustachian tube area with the location of the carotid artery nearby. Several patients died during the surgery when the carotid artery was cut or damaged. They also said some patients were made permanently worse by this.

Mayo described one final option that they said was extremely risky and could also make the problem permanently worse. Nerves from the eustachian tubes run to a bone in the back of the throat. This area acts as a pulley system, allowing the eustachian tubes to open and close. The procedure is to shatter the bone and thereby inactivate the pulley system, which should allow the eustachian tubes to close.

While any info is good to have, I can't say that I really trust the docs at Mayo. They don't seem to know much about PET.

Do you have any info on numbers of people who have PET? Mayo said it is extremely rare. Have you heard of anyone else trying to gain weight to fix the problem?

Have your symptoms changed over time or gotten worse? Did you have the snapping problem at the start of your PET? If not, how long have you been snapping? I am devastated by the snapping. It is the worst thing about PET. I have only had the snapping for a few weeks and don't know how I will live with it. Mine sounds like metal snapping behind my nose when I swallow. As for coping, I'm not doing well and can't imagine living like this the rest of my life. I saw on-line that someone said (maybe it was you) that this sound comes from the eustachian tube trying to close. While it is horrific, could this mean the body is trying to fix the problem on it's own? Could it be some kind of sign of hope? Or is it just a sign of the symptoms worsening? I suspect my snapping was caused by the tympanogram or a result of the thyroid surgery. Have you ever had a tympanogram or other tests that you felt worsened your PET? The results of the tympanogram showed that i have PET to a very high degree in the left ear. The right ear is questionable.

Do you have any experience with either the PET or the TMJ with the sound of glass breaking? I have a friend with TMJ. She has the sound of breaking glass when her TMJ is bad.

Have you tried tubes in your ears? One of the Mayo docs said tubes change the situation for people with PET. For some, tubes make it worse. For others, tubes make the PET different and possibly more tolerable.

Have you found any things that you avoid because they make your PET worse? Mayo told me to never use decongestants, sleeping pills like Unisom (they have a slight decongestant in them) and to be careful with pain medicine. They thought Tylenol might be okay but advil, naproxin, aleve could be trouble. I have found that I cannot tolerate Tylenol, it makes my ears worse. Aspirin is the only one I will use but I have to be desperate. Even aspirin makes my ears worse. I now wonder if any medication can potentially make my ears worse. I know for sure that the pain medicine given to me in the hospital for my thyroid surgery, made my ears terrible.

Have you found any things that help your PET? Or any things that help you cope better? One doc at Mayo said drinking lots of water would help. I'm not sure on this.

One of the Mayo docs told me PET can affect your speech. Have you heard of this?

Have you heard of anyone losing some of their hearing from PET? Is there any risk of this with Dr. Poe's procedure?

I read on-line that one man believes his PET is from Botox injections in the roof of his mouth. I had Botox injected in eye wrinkles for cosmetic reasons. I had this done 3 times over the last 2 years. I wonder if this could be a factor. The last Botox I had was the middle of November. It takes 2 weeks to be fully activated. Two weeks later, I had PET. All of the ENT docs I have consulted with say there is no connection and that Botox is safe. I am not convinced.

Do you have any other weird symptoms elsewhere in the body that you think could be related to your PET?

How long have you had PET?

Have you had anxiety from it? I sure have.

Have you been to the Shea Clinic? What do they do for PET?

Thanks for discussing all this with me. It sure is great to have someone else who understands...

SCP

hi scp,
not sure if i can answer all your q s but i will try to remember them.
mine started last fall.
dr poe said gaining would not help at this point, so i quit trying.
it has gotten worse since the fall,the snapping started in feb.
the drops did not help me, but you never know.
if the pet gets bad enough it can effect your speech, you cant hear because of the body sounds, but it will not hurt your hearing.
i do beleive tmj is a seperate issue, it really has no effect on the tissue in the e tube, dr. poe is the expert and he says it is a seperate issue so i do think he is right.
i have not found anything that helps, i wish i had.
the facts are clear, we are missing tissue and thats what causes this, its terrible!
i have heard tubes will or can make it worse so i am to afraid to try it.
i never went to shea, only spoke to people who had been there, some good some not, they put a silicone tube in the e tube to narrow it.
dr poe has never over corrected anyone yes there are risks but they sound minimal.
anxiety...oh god...i would rather be dead, xanax for me for now.
honestley, the snapping does not mean its getting better for me worse, i have only gotten worse.
i hope this info helps, please let me know if i missed anything. thanks lib
yes i have seen poe, no not worried about the tissue, this man knows his stuff no question, hes wonderful.

scp and petpeeve,
do you get reverberation in your ears , do outside sounds bother you?
when you hold the phone on one ear does the other ear reverberate to the persons voice?
i cant stand it my eardrums move to the rate of the person talking.
thanks fellow ears! lib

Lib,
I do not think I have the reverberation problem. It sounds bad. I wonder if it develops as the PET progresses.

Do you have it equally in both ears? If the PET is worse in one ear, try not sleeping on that side at all. I have found that sleeping on my back or on my side that is better with the PET makes a big difference. If I don't do this, my bad ear is hideous all day.

How long did you wait for a consult with Poe? I called Monday and the first available is Nov. 18! When did you see Poe? Are you having one ear done in August? When will he do the second ear?

What are the risks of the procedure?

What does Poe say about the snapping problem?

Once a patient is fixed, what will prevent this from happening again?

SCP

Lib,
I do not think I have the reverberation problem. It sounds bad. I wonder if it develops as the PET progresses.

Do you have it equally in both ears? If the PET is worse in one ear, try not sleeping on that side at all. I have found that sleeping on my back or on my side that is better with the PET makes a big difference. If I don't do this, my bad ear is hideous all day.

How long did you wait for a consult with Poe? I called Monday and the first available is Nov. 18! When did you see Poe? Are you having one ear done in August? When will he do the second ear?

What are the risks of the procedure?

What does Poe say about the snapping problem?

Once a patient is fixed, what will prevent this from happening again?

SCP
hi,
because i dont know what i can really say i will keep it simple.
i waited months to get in to see him i made an appt in feb and it was july 1, but i went may 6 as my dr. was in contact with him on my case and an opening came up.
yes i am having one ear in aug, then i have to wait 2-3 months for the second, but i am praying that they will both be done if circumstances allow.
my snapping is the tube, the muscle i guess.
the risks seem low, nothing that will stop me from this, i trust this man with my life, and after you meet him you will also.
i am not sure if it can prevent this from happening again, i am going to ask but it is my understanding that scar tissue will form and that should last indefinatley.
i think my right ear is worse but the left is catching up quick, i wonder what sleeping position has to do with it?
do you think you still have any acid reflux problems?
also what did you mean by anything else going on in the body? what do you get? i have been having a lot of muscle spasms.
did you make an appt, i hope so, no human should have to live with these disturbing symptoms. lib

Lib,
I'm trying to think all this through and still have some questions. What did you mean by your phrase that you are praying both ears will be done if circumstances allow? The other ear must be bad enough to qualify?

No, I do not have acid reflux issues that I know of. Do the meds for that play a role in your PET? Speaking of meds, were you told to avoid decongestants and pain meds? And were the meds you took for sinus infections a factor? Were these antibiotics?

Did the nose spray make you worse?

My appointment is Nov. 18. Will you be flying or driving? Can you fly home right after ear surgery? How long is the hospital stay?

Is there a website explaining the procedure? Can you tell me the risks? What is the recovery like?

Is the doc nice and understanding?

As for what I meant by other things going on in the body, I have been diagnosed with a dozen things from by Mayo evaluation - thyroid cancer and glaucoma to name a few. Where do you have muscle spasms? I have pain in the arms and legs that is being investigated.

You must be counting the days until your surgery!


Keep me posted, scp

Lib,
I'm trying to think all this through and still have some questions. What did you mean by your phrase that you are praying both ears will be done if circumstances allow? The other ear must be bad enough to qualify?

No, I do not have acid reflux issues that I know of. Do the meds for that play a role in your PET? Speaking of meds, were you told to avoid decongestants and pain meds? And were the meds you took for sinus infections a factor? Were these antibiotics?

Did the nose spray make you worse?

My appointment is Nov. 18. Will you be flying or driving? Can you fly home right after ear surgery? How long is the hospital stay?

Is there a website explaining the procedure? Can you tell me the risks? What is the recovery like?

Is the doc nice and understanding?

As for what I meant by other things going on in the body, I have been diagnosed with a dozen things from by Mayo evaluation - thyroid cancer and glaucoma to name a few. Where do you have muscle spasms? I have pain in the arms and legs that is being investigated.

You must be counting the days until your surgery!


Keep me posted, scp
hi scp,
i am praying for both ears to be done on the ninth , he only does them one at a time, but i am praying for a miracle thats all. yes they both need surgery.
no the acid reflux meds dont play a role, acid reflux can contribute to pet.
i was not told to aviod anything but i knew per my conversation with the dr. it was bad to take decongestants, i dont know about the rest of the meds.
yes the sudafed, claratin, and flonase were a factor, but the first ent i saw misdiagnosed me with mineires and allergies and viola....pet
which nose spray...the hormone spray? if so no it did nothing no good no bad.
we are driving, yes you can fly but you will have to have a tube in tour ear if you fly. its outpatient so no hospital stay.
no website, risks are over correcting the tube, hes never done that, only under and thats ok, other than that really its nothing that would put you off.
he is very nice, he knows this is horrible to live with and he is understanding of the problem. he and my dr at hopkins have the best bedside manner i have ever come across. put it this way, i am scared of surgery, because i have never had it, but i cant wait to see dr. poe again because he talks to you i have asked a lot of questions and he always answers them in a way i can understand, hes a real person to talk to as well. if all the drs were like him and dr. carey this world would be a much better place. you wont regret going i promise, hes a blessing! i wrote a letter with my qs after my appt and i got a very detailed letter back almost 2 pages, anyone in my family or friends that read it could not beleive what a great letter he took the time to write me,and they all said now thats an incredible doctor and i agree.
muscle spasms everywhere, what else did they dx you with?
what are your pet symptoms exactley? lib

Hey Lib,
Thanks for all the info. It all sounds very reassuring. The doc sounds wonderful. You are so lucky to have two great docs. I have not had any good docs. In fact, all 5 have been dinks. They think they are gods and either misdiagnose me or want nothing to do with me after knowing the real diagnosis because they don't know what to do with me. I don't trust any of them. I am now searching for a good one so I have a doc to advocate for me. I thought your idea of my local doc getting in touch with the other doc about my case was a good idea. Plus, I would like to get a few questions answered plus pleading my case for a better date would be good also. Don't know how I will make it to Nov. now with the snapping. Even in just the last week, I can't believe how much worse the snapping is.

You mentioned Hopkins. Is this the one in Baltimore? Is that where you are?

Do you know of anyone who has had successful results with the procedure? I am assuming that the cadaver tissue they start with is actual fat pads from the eustachian tubes, is this correct?

How did they finally correctly diagnose you? Were there specific tests?

Can I ask you how much weight you lost? What did the doc mean by it wouldn't help to gain weight at this point? Do you know of anone who was helped by weight gain? I need to know because it has been brutal trying to gain. I am up 8 pounds and sick of trying. Now clothes don't fit (I got rid of bigger clothes long ago) and forcing myself to eat constantly feels awful. If it won't help I want to stop trying so hard.

As for my exact symptoms, I have fullness and pressure in the ears and head. Voices sound funny and my speech is changing. I hear my heartbeat in my ears. The body sounds make it harder for me to hear. I have headaches plus the snapping behind the nose. I also have clicking, popping and crunching sounds. I don't know for sure if this is in the ears or the TMJ problem. I was told at Mayo that it was in the ears. Not sure I believe them. I also get disoriented when it is really bad. It is hard to think or concentrate. I have some relief when I first wake up in the morning. My ears are not full and what I call blocked up. This last an hour or so or until I eat breakfast. As soon as I eat, the ears are blocked for the rest of the day. Docs tell me this is due to lying flat at night. Do you have this same little bit of relief in the morning?

I also took sudafed and allegra briefly but they must have had an affect.

I am not having muscle spasms that I know of. Mine seems more like pain in the arms and legs. It comes and goes in the arms. The legs are more constant. I'm having a bone scan next week.

I went to a brilliant oral surgeon this week who works with TMJ. He told me muscle spasm can be related by TMJ. It can be in the arms and legs and all over the body. He said it was possible that I was clenching the arms and legs almost in a fetal position at night when I clench my jaw and this could explain the pain I feel during the day. He wasn't sure. He did order an MRI to look at the TMJ issue. Plus he is extending the MRI to examine the eustachian tubes. Maybe it will show missing fat pads. What do you do for your TMJ? Does yours ever sound like breaking glass?

This is getting long so more about my depressing diagnoses next post. I am one complicated case.

Just curious, how old is your child? My kids are 11 and 9. The oldest a girl, the youngest a boy. How has your child been with having to deal with your illness? My kids seem to be getting used to it but it's really hard.

I will be praying for you for an excellent surgical outcome!

scp

Hey Lib,
Thanks for all the info. It all sounds very reassuring. The doc sounds wonderful. You are so lucky to have two great docs. I have not had any good docs. In fact, all 5 have been dinks. They think they are gods and either misdiagnose me or want nothing to do with me after knowing the real diagnosis because they don't know what to do with me. I don't trust any of them. I am now searching for a good one so I have a doc to advocate for me. I thought your idea of my local doc getting in touch with the other doc about my case was a good idea. Plus, I would like to get a few questions answered plus pleading my case for a better date would be good also. Don't know how I will make it to Nov. now with the snapping. Even in just the last week, I can't believe how much worse the snapping is.

You mentioned Hopkins. Is this the one in Baltimore? Is that where you are?

Do you know of anyone who has had successful results with the procedure? I am assuming that the cadaver tissue they start with is actual fat pads from the eustachian tubes, is this correct?

How did they finally correctly diagnose you? Were there specific tests?

Can I ask you how much weight you lost? What did the doc mean by it wouldn't help to gain weight at this point? Do you know of anone who was helped by weight gain? I need to know because it has been brutal trying to gain. I am up 8 pounds and sick of trying. Now clothes don't fit (I got rid of bigger clothes long ago) and forcing myself to eat constantly feels awful. If it won't help I want to stop trying so hard.

As for my exact symptoms, I have fullness and pressure in the ears and head. Voices sound funny and my speech is changing. I hear my heartbeat in my ears. The body sounds make it harder for me to hear. I have headaches plus the snapping behind the nose. I also have clicking, popping and crunching sounds. I don't know for sure if this is in the ears or the TMJ problem. I was told at Mayo that it was in the ears. Not sure I believe them. I also get disoriented when it is really bad. It is hard to think or concentrate. I have some relief when I first wake up in the morning. My ears are not full and what I call blocked up. This last an hour or so or until I eat breakfast. As soon as I eat, the ears are blocked for the rest of the day. Docs tell me this is due to lying flat at night. Do you have this same little bit of relief in the morning?

I also took sudafed and allegra briefly but they must have had an affect.

I am not having muscle spasms that I know of. Mine seems more like pain in the arms and legs. It comes and goes in the arms. The legs are more constant. I'm having a bone scan next week.

I went to a brilliant oral surgeon this week who works with TMJ. He told me muscle spasm can be related by TMJ. It can be in the arms and legs and all over the body. He said it was possible that I was clenching the arms and legs almost in a fetal position at night when I clench my jaw and this could explain the pain I feel during the day. He wasn't sure. He did order an MRI to look at the TMJ issue. Plus he is extending the MRI to examine the eustachian tubes. Maybe it will show missing fat pads. What do you do for your TMJ? Does yours ever sound like breaking glass?

This is getting long so more about my depressing diagnoses next post. I am one complicated case.

Just curious, how old is your child? My kids are 11 and 9. The oldest a girl, the youngest a boy. How has your child been with having to deal with your illness? My kids seem to be getting used to it but it's really hard.

I will be praying for you for an excellent surgical outcome!

scp
hi,
yes hopkins in baltimore, i live in virginia, after going to several drs her i went to hopkins, no one around could help me.
i think finding a good dr there is a good idea, i am not sure he will be able to get the appt moved however, mine was a miracle as a conference had been canceled and my dr. was trying to make sure the dx was correct. dr poe dxed the pet, in 2 seconds, by looking at my tubes with an endoscope on a tv monitor. hes the expert. my defects are small so i can understand why it was hard to find them, at any rate my dr. at hopkins cares and thats what matters to me.
i lost a few pounds in the begining but the stress and being misdiagnosed made me lose at least another 10 lbs, but i gained it back and a few more trying to help the ears, by the time i got to poe, i could not eat another donut but he said lose what you did not have as i was not going to gain it where i need it, weight loss is some what of a myth.
i have a splint but i really think its a waste, my ears are my problem, but i am continuing anyway for now. they are 2 seperate issues.
the tissue is alloderm, its used for tissue replacement, it can be used anywhere in the body.
my advice is make sure your on the cancel list at poes, find a very understandind doc there, get some meds to try to help you cope.
i know the wait is long, trust me, but i did it and so can you.
my daughter is 9, shes hangin in there, its just not fair she is missing out on so much.
are you noise sensitive at all?
did they use a scope to diagnose your pet?
can you feel the eardrums move when you talk or cough?
are your ears sensitive to touch?
thanks, lib

Hi Lib,
Do you have any feel for the numbers of people who have PET? Mayo made it sound very rare. Have your docs said anything about this?

Is the endoscope the snake-like thing they put up your nose? If so, the doc who diagnosed me used that but there was no TV monitor.

The whole weight loss and weight gain thingis bizarre. I am with you on the not being able to eat another donut. I may never eat another crispy creme ever again. What did you mean by the weight loss thing being sort of a myth? What I don't get is when these docs tell you to try to gain to help the ears, how could anyone gain weight inside their eustachian tubes? Maybe if you gained over 100 pounds. On the face of it, it sounds crazy.

Did you have an MRI to look at your TMJ? I am really bummed out. Yesterday I went for the MRI and couldn't have it. They told me that the noise level inside the MRI machine is like very loud jackhammers. I said wait a minute, what would that do to my PET. They, of course, don't know because like everyone else they have never heard of PET. The oral surgeon who ordered the MRI thinks I have a very serious case, not just a case that only needs the splint. I guess the MRI shows everything - all the cartiledge thats affected and if the disc if slipped. So I talked to the oral surgeon's nurse and said I couldn't have it until the expert PET doc was asked if the noise could make my PET worse. A nurse called me today and told me they contacted the office of the expert doc and he is on vacation for 2 weeks. I guess a fax was sent saying that as far as they know, noise level will not worsen PET but if we wanted the expert's opinion we would have to wait the 2 weeks. I don't know what to do. It seems like I run into so many issues with how all my problems come together. It is so complicated. Meanwhile, I am in agony with the pain. Did your TMJ ever sound like breaking glass? Did you ever take an anti-inflammatory for TMJ? Can you tolerate any like tylenol, aspirin, advil with your PET? Between my ear problem and the TMJ, I am a mess. The combination of these two makes the thyroid cancer surgery look like a piece of cake.

Do you hear clicking and popping in your ears? Is it the ears or the TMJ? As far as noise sensitivity, I have become more sensitive definitely. My bad ear feels sore when touched. I thought the movement I feel in my ears was from the body sounds but I'm not sure. Do you feel any relief in your ears when you first wake up?

Do you know of any success cases from the expert doc?

Did you ever consider that silicone tube thing? What did your hopkins doc think about that? It sounds worse than the expert doc's procedure.

Did either of your docs tell you to drink lots of water?

Also, on my symptom list I forgot facial tightness and tightness around the eyes but this is probably from the TMJ. Do you have this?

That letter you received sounds great. Wish I could read it.

Hey, one weird thing I'm thinking about . . . Could the procedure make the nose bigger? I suspect it could. This is not a happy thought. I have a mild deviated septum in my nose. This could be an issue. Maybe the deviated septum could get worse from the procedure. I hope I won't have to have surgery on that too.

As for the diagnoses, the biggies are the glaucoma, PET, thyroid cancer. The others are - ndeviated nasal septum, onset of venous prominence of the hands and forehead, weight loss, facial dermatitis, hair loss, enchrondfroma, patella femoral syndrome, myofascial pain syndrome, ovarian cyst, anxiety, nonprodromal migraine. The vein issue happened literally overnight. I went to bed and the next morning blue veins had come out on my hands, forehead and under ny eyes. They are permanent and ugly. That night I had taken lexapro, an anti-anxiety med for the first time. The docs aren't sure why I had the vein problem. But I had cancer going on and things weren't right. I tried several anti-anxiety meds for about 3 weeks and then quit. I felt sick on all of them.

My skin went crazy with rashes, welts and acne. I have a patch of hair right above the forehead and in the center where at least half the hairs are missing. They think it is female pattern baldness - a horror - but I'm not sure. Enchrondroma is probably something I was born with. I have an area in my upper right arm where bone is missing and there is funny cartilege instead. They are hoping there are no more of these that is why I am having the bone scan. Patella femoral syndrome is a knee problem. Myofascial pain is clenching the body and jaw from stress. The cyst is not a problem. Migraines were from stress I think.

Here's the deal on the cancer. My neck felt full and not normal. Mayo did an ultrasound and found a nodule. They said these are totally common in the thyroid and 95 % of the time not cancer. I was in the 5 %. They did a needle biopsy - 10 needles full of tissue taken out, not fun. I had to have the whole thyroid out. Mine was a good case. Just one cancerous nodule, very small, not spread to the lymph nodes, stage 1 cancer and grade 1 (the best), also the best type of thyroid cancer, papillary. My chances are more than 99 % that I am permamnently cured. No radiation, no chemo. I have had trouble adjusting to the med. I have to take pills of the hormone the thyroid makes for the rest of my life. They say your body eventually adjusts to the med. I have a very large incision across my neck.

The glaucoma is a bad deal. My eye doctor ahd me on a low-level steroid eyedrop for an allergy. I also had a genetic marker for developing glaucoma lin old age called pigmentary dispersion syndrome. The steroid in the eyedrop probably caused it to activate. I have permanent damage to the optic nerves. It is scary. Glaucoma tends to progress and take your vision. There are eye surgeries but you can only have 3 lasers in your lifetime. The results are not permanent, they buy you some time but they also have risks like vision loss. It is unusual to have glaucoma this young. It is better to get it when you are old and don't run out of options before you croak from something else.

What happened to me is this. My first symptom was the ears. Then it was vision problems. Then my body just went nuts, almost trying to shut down. Every week or so there was something else wrong, like a failure mode. Before November, I was healthy and very active. Also, the frustrating thing is that Mayo tells me the thyroid cancer is not responsible for any of my symptoms. While I had the cancerous nodule, my throid was functioning normally, the hormone level was perfect. So they tell me none of these problems are related. I'm still not sure I believe Mayo. The way I figure it, it is possible that I can get all these problems fixed or manageable in time except the glaucoma. It may take me a year. On the glaucoma, I have to pray that mine does not progress and stays were it is. This can happen. Thank god for the expert doc for the ears. Mayo told me I was just going to have to live with it. The stress that gave me of knowing that coupled with having to live with the glaucoma was incredible. My husband found out about the expert doc's procedure from on-line research. So now I have hope.

Take care,
scp (Kathleen)

Hi Lib,
Do you have any feel for the numbers of people who have PET? Mayo made it sound very rare. Have your docs said anything about this?

Is the endoscope the snake-like thing they put up your nose? If so, the doc who diagnosed me used that but there was no TV monitor.

The whole weight loss and weight gain thingis bizarre. I am with you on the not being able to eat another donut. I may never eat another crispy creme ever again. What did you mean by the weight loss thing being sort of a myth? What I don't get is when these docs tell you to try to gain to help the ears, how could anyone gain weight inside their eustachian tubes? Maybe if you gained over 100 pounds. On the face of it, it sounds crazy.

Did you have an MRI to look at your TMJ? I am really bummed out. Yesterday I went for the MRI and couldn't have it. They told me that the noise level inside the MRI machine is like very loud jackhammers. I said wait a minute, what would that do to my PET. They, of course, don't know because like everyone else they have never heard of PET. The oral surgeon who ordered the MRI thinks I have a very serious case, not just a case that only needs the splint. I guess the MRI shows everything - all the cartiledge thats affected and if the disc if slipped. So I talked to the oral surgeon's nurse and said I couldn't have it until the expert PET doc was asked if the noise could make my PET worse. A nurse called me today and told me they contacted the office of the expert doc and he is on vacation for 2 weeks. I guess a fax was sent saying that as far as they know, noise level will not worsen PET but if we wanted the expert's opinion we would have to wait the 2 weeks. I don't know what to do. It seems like I run into so many issues with how all my problems come together. It is so complicated. Meanwhile, I am in agony with the pain. Did your TMJ ever sound like breaking glass? Did you ever take an anti-inflammatory for TMJ? Can you tolerate any like tylenol, aspirin, advil with your PET? Between my ear problem and the TMJ, I am a mess. The combination of these two makes the thyroid cancer surgery look like a piece of cake.

Do you hear clicking and popping in your ears? Is it the ears or the TMJ? As far as noise sensitivity, I have become more sensitive definitely. My bad ear feels sore when touched. I thought the movement I feel in my ears was from the body sounds but I'm not sure. Do you feel any relief in your ears when you first wake up?

Do you know of any success cases from the expert doc?







Did you ever consider that silicone tube thing? What did your hopkins doc think about that? It sounds worse than the expert doc's procedure.

Did either of your docs tell you to drink lots of water?

Also, on my symptom list I forgot facial tightness and tightness around the eyes but this is probably from the TMJ. Do you have this?

That letter you received sounds great. Wish I could read it.

Hey, one weird thing I'm thinking about . . . Could the procedure make the nose bigger? I suspect it could. This is not a happy thought. I have a mild deviated septum in my nose. This could be an issue. Maybe the deviated septum could get worse from the procedure. I hope I won't have to have surgery on that too.

As for the diagnoses, the biggies are the glaucoma, PET, thyroid cancer. The others are - ndeviated nasal septum, onset of venous prominence of the hands and forehead, weight loss, facial dermatitis, hair loss, enchrondfroma, patella femoral syndrome, myofascial pain syndrome, ovarian cyst, anxiety, nonprodromal migraine. The vein issue happened literally overnight. I went to bed and the next morning blue veins had come out on my hands, forehead and under ny eyes. They are permanent and ugly. That night I had taken lexapro, an anti-anxiety med for the first time. The docs aren't sure why I had the vein problem. But I had cancer going on and things weren't right. I tried several anti-anxiety meds for about 3 weeks and then quit. I felt sick on all of them.

My skin went crazy with rashes, welts and acne. I have a patch of hair right above the forehead and in the center where at least half the hairs are missing. They think it is female pattern baldness - a horror - but I'm not sure. Enchrondroma is probably something I was born with. I have an area in my upper right arm where bone is missing and there is funny cartilege instead. They are hoping there are no more of these that is why I am having the bone scan. Patella femoral syndrome is a knee problem. Myofascial pain is clenching the body and jaw from stress. The cyst is not a problem. Migraines were from stress I think.

Here's the deal on the cancer. My neck felt full and not normal. Mayo did an ultrasound and found a nodule. They said these are totally common in the thyroid and 95 % of the time not cancer. I was in the 5 %. They did a needle biopsy - 10 needles full of tissue taken out, not fun. I had to have the whole thyroid out. Mine was a good case. Just one cancerous nodule, very small, not spread to the lymph nodes, stage 1 cancer and grade 1 (the best), also the best type of thyroid cancer, papillary. My chances are more than 99 % that I am permamnently cured. No radiation, no chemo. I have had trouble adjusting to the med. I have to take pills of the hormone the thyroid makes for the rest of my life. eyedrop for an allergy. I also had a genetic marker for developing glaucoma lin old age called pigmentary dispersion syndrome. The steroid in the eyedrop probably caused it to activate. I have permanent damage to the optic nerves. It is scary. Glaucoma tends to progress and take your vision. Tare old and don't run out








of options before you croak from something else.

What happened to me is this. My first symptom was the ears. Then it was vision problems. Then my body just went nuts, almost trying to shut down. Every week or so there was something else wrong, like a failure mode. Before November, I was healthy and very active. Also, the frustrating thing is that Mayo tells me the thyroid cancer is not responsible for any of my symptoms. While I had the cancerous nodule, my throid was functioning normally, the hormone level was perfect. So they tell me none of these problems are related. I'm still not sure I believe Mayo. The way I figure it, it is possible that I can get all these problems fixed or manageable in time except the glaucoma. It may take me a year. On the glaucoma, I have to pray that mine does not progress and stays were it is. This can happen. Thank god for the expert doc for the ears. Mayo told me I was just going to have to live with it. The stress that gave me of knowing that coupled with having to live with the glaucoma was incredible. My husband found out about the expert doc's procedure from on-line research. So now I have hope.

Take care,
scp (Kathleen)
hi kathleen,
geeezzzz, you really have been thru the ringer, i feel so bad. i had an inner ear virus and this its been a mess so i do know how you feel.
how did your husband find expert doc, i am assuming we are talking about poe.
i have discovered on my own that pet is not that rare, people go misdiagnosed for ever. most doctors dont even know about it, so i think its higher than anyone knows, a lot of patients are told its all in there head.
one thing have you been checked for autoimmune disease? that can be connected to pet.
my tmj does not bother me, so i think if someone had caught the pet first i would have never known, and would have saved a lot of money.
i had an mri, it wont hurt the pet, and the expert will probably tell you that also. so use ear plugs and breath thru your mouth.
i have not needed to take any tylenol or anything like that so i dont know the answer to that.
yes i have clicking popping snapping, moving eardrums, voice reverberation you name it, it is in my ears.
i have symptoms when i get up its always there, always. i am not lucky like some.
i only know that this procedure is new but seems to be working well, i dont know any numbers but what choice do we have.
yes i have considered the tubbing , only because of the dreadful wait, but both drs dont think its a good idea.
no, i was never told to drink lots of water, but i drink plenty of water and fluids.
no the surgery is not going to make the nose bigger but if you have a deviated septum it may need to be corrected first because the endoscope wont fit, i know a guy that is having surgery but had to get the nose straight first, so if you want to be productive in the wait go to see if a 4mm scope will fit. have you tried the nose spray yet? i know it has worked on some people, i was praying thats all i would need but it did not work for me.
i had my preop today and passed, the great thing i found out was in my chart at my reg drs office was a letter from the expert to my j.h. dr to my reg, no other drs had ever sent my reg dr anything and i went to 7 others before i found the two best ever. anyway i read it and i was just amazed at how much i was listened to, i knew j.h. dr always listened to every word and the expert just the same. as i said if all drs were like my guys this world would be such a better place. i think i have the 2 best ever, i know i am lucky to have found these guys and i think they are going to get me thru, and basically save my life. i love them both!
i wish for you the same and if you have to keep going till you find the right one locally, maybe you could ask dr poe when you see him if he knows anyone locally, i would trust anything he suggests. to bad dr. carey is not close to you also.
so tell me your exact ear symptoms.
hang in there! lib

can you tell me what the eustachian tubes can cause as my dr says they are only hair width wide and only cause blocked muffled hearing and yet i get swollen throat cant swallow when they swell and numerous other problems
marj :rolleyes:

hi,
i only know they can either be to closed or to open, i am not sure how they would cause throat problems, it sounds like something in your throat is causing ear problems. i would find a new doc if yours cant figure it out.lib

Hi Lib,
I'm not sure how my husband found Poe. Will (husband) is a software developer so on-line research comes easy.

Thanks for all the info. Good idea about checking out the size of the endoscope with the deviated septum. I hope I don't need yet another surgery!

Yes, I was checked for auto-immune diseases, turned up nothing. I don't get how PET can be associated with auto-immune. Is the process of PET like auto-immune, the body attacking itself? Also, a friend suggested that perhaps we were born with some defect in the fat pads that finally fully activated to destroy the tissue. What do you think?

What was your MRI for? When did you have it? What did it show?

Any feel for how new the procedure is and how many the expert has done?

I haven't tried the nose drops. It didn't really sound like there was much chance of them working. Also, my mother took Premarin for hormone replacement therapy and every hair on her head fell out. So I am afraid to try it. I already have some missing hair, don't need to make it worse.

What did you think of my concerns with botox? Ever heard of this being associated with PET? My sister got me using it. She is a fashionista and up on the latest hair, makeup, etc. The stuff works, but I think it's toxic to some people's bodies.

I received a letter from Poe. It talks about patchulous and the procedure. Sounds very good.

Thanks, SCP (Kathleen)

Hi Lib,
I'm not sure how my husband found Poe. Will (husband) is a software developer so on-line research comes easy.

Thanks for all the info. Good idea about checking out the size of the endoscope with the deviated septum. I hope I don't need yet another surgery!

Yes, I was checked for auto-immune diseases, turned up nothing. I don't get how PET can be associated with auto-immune. Is the process of PET like auto-immune, the body attacking itself? Also, a friend suggested that perhaps we were born with some defect in the fat pads that finally fully activated to destroy the tissue. What do you think?

What was your MRI for? When did you have it? What did it show?

Any feel for how new the procedure is and how many the expert has done?

I haven't tried the nose drops. It didn't really sound like there was much chance of them working. Also, my mother took Premarin for hormone replacement therapy and every hair on her head fell out. So I am afraid to try it. I already have some missing hair, don't need to make it worse.

What did you think of my concerns with botox? Ever heard of this being associated with PET? My sister got me using it. She is a fashionista and up on the latest hair, makeup, etc. The stuff works, but I think it's toxic to some people's bodies.

I received a letter from Poe. It talks about patchulous and the procedure. Sounds very good.

Thanks, SCP (Kathleen)
hi kathleen,
first off how did you get a letter from poe that fast and second what did it say?
i dont think botox in the face would do it, i am not sure but ask the expert he would know.
some autoimmune does play a role like rheumatoid disease.
you know i dont know if we were or were not born with the defects, i dont beleive i was i think like the expert said, the chain of events opened them.
mri was for dizzy in late summer, showed a cyst in sinus thats it, but i did not have pet symptoms then, they think i had a inner ear virus. thats what the expert said and i am sticking to his dx.
no numbers on the procedure it is new,but he is very confidant and like i said what choice do we have, i know if i continue to be miserable dr. poe will be there to try, and ultimatley close them if thats what i want. there is the tuboplasty at shea also, i dont know about that one.
so do tell about the letter, hes the best at letters. so what are your exact pet symptoms?
lib
and after a very bad day my daughter wants to do everything we use to, and i cant mentally take another day, i think about going to shea clinic or begging for the teflon injections, just trying to hang in there, its very hard.
also do you have any tinnitus?

Hi Lib,

This is scp's hubbie. She asked me to send you a note to let you know she hasn't answered you back because she's not been well, and she'll chat with you again soon. She really appreciates "talking" with you about the whole PET situation. It's great for her to have someone else who can relate - lord knows I can't...

The letter from Poe was just a form letter which described the PET surgery in detail. I agree with you, by the way - he writes extremely well.

Hang in there - August is almost here!

SCP's Hub

Hi Lib,

This is scp's hubbie. She asked me to send you a note to let you know she hasn't answered you back because she's not been well, and she'll chat with you again soon. She really appreciates "talking" with you about the whole PET situation. It's great for her to have someone else who can relate - lord knows I can't...

The letter from Poe was just a form letter which described the PET surgery in detail. I agree with you, by the way - he writes extremely well.

Hang in there - August is almost here!

SCP's Hub
hi scp hubby,
i hope she feels better soon, shes been through so much. nobody can relate unless you have had pet, it is a very disturbing condition, its torture 24/7.
thank god for dr. poe, a man who does understand.
tell her to hang in there also and i miss talking to her as well. lib

Hi Lib,
I am rejoining the human race. The pain syndrome flared up and knocked me down for awhile. I was totally overwhelmed physically and emotionally. I have had lots of doctor appointments, good and bad. I learned more about some of my diagnoses so I am now moving ahead.

Lib, I am really scared about the noise that has started in my left ear. It started two weeks ago. It was a buzzing sound that was very high-pitched yet intermittent. It has gotten louder and now is constant.

I saw in your post you asked me about tinnitus? Do you have it? Is is part of PET? Is it permanent? Does Poe's procedure fix it?

After everything I have been through and all the other things I have to deal with, how could I have this? I am at the end of my rope.

I saw on-line that TMJ may cause tinnitus. I don't know what I will do if it is permanent.

When is your surgery date? Keep me posted.

Hi Lib,
I am rejoining the human race. The pain syndrome flared up and knocked me down for awhile. I was totally overwhelmed physically and emotionally. I have had lots of doctor appointments, good and bad. I learned more about some of my diagnoses so I am now moving ahead.

Lib, I am really scared about the noise that has started in my left ear. It started two weeks ago. It was a buzzing sound that was very high-pitched yet intermittent. It has gotten louder and now is constant.

I saw in your post you asked me about tinnitus? Do you have it? Is is part of PET? Is it permanent? Does Poe's procedure fix it?

After everything I have been through and all the other things I have to deal with, how could I have this? I am at the end of my rope.

I saw on-line that TMJ may cause tinnitus. I don't know what I will do if it is permanent.

When is your surgery date? Keep me posted.
hi scp,
what all have you learned?
i have tinnitus it is a constant hum, sometimes it goes high pitched.
i think it part of pet but i dont know. sometimes my hearing will fade out a bit and expert doc said that was pressure change in the ear.
the snapping in the face has gotten louder and its making me crazy.
trust me i know what you mean....i have been through a lot also and wonder the same thing...how could this happen and like you i am at the end of my rope, i hardley make it through the days.
surgery is august 9, seems like a year away for me. i am very scared i have never had surgery before.
if the tmj is causing the tinnitus it should not be permanent, it should get better with treatment, i beleive mine is the pet. i have had all sorts of crazy noises in my ears scince this started, it makes me shake and disturbs me mentally. i am thinking about asking expert doc just to close them completely, and put tubes in my ears, i am afraid i am going to snap any day.
are you sensitive to noise, like dishes or loud voices or loud laughing?
what did your letter say? lib
oh...i also have a new disturbing symptom, if i tip my head or try to thrust my hair back with my head my ear cracks really loud, other people can hear it also, do you get this?
and i hear my heart beat in my right ear when i bend over or lay down and roll to the right, its crazy! i spoke with a patient that had the surgery,
i gave the office permission to give my number to other patients, she is improved, symptoms are diminished but not cured. so i am hopeing other patients will get my number and call me, talk to you soon. lib
also describe your snapping sound does it happen when you talk also? other people can hear mine. i also feel and hear a lot of crackling and clicking in my face, do you get that?

Hi Lib and SCP: This is a combo note since I was reading the postings between the two of you. I just wanted to tell you that I am also sensitive to loud noises. Certain things bother me more than others--the sound of a spoon stirring sugar into a glass seems so intense and female singers vs male--seems to be more uncomfortable in the high ranges. I have gotten to a point that if I go to a movie I wear earplugs because they crank up the volume so much. I can hear the movie fine with two earplugs in but can't hear much of anything if a friend asks me a question. They know to wait until we leave the theatre and actually get back into the car where it is quiet. I went to a musical recently and fortunately I carry my earplugs with me all the time now. As soon as the female lead broke into her song I was scrambling for the earplugs. I am sure that creates some curious looks from others. TV and things around the house don't seem to bother me but when I am in a restaurant it seems that there are so many noises and that is part of the reason it bothers me. Glad to see that you are back with us SCP. I missed getting a hold of Poe today but will try next week. You also mentioned the cracking sound is audible to others--that is amazing--no wonder it drives you nuts. I don't have that but I have noticed that I have tinnitus and at night when I sleep I sometimes have to find a position where my ear isn't acting like an amplifier and picking up my heart sounds--it is loud enough to keep me awake. Doesn't seem to matter if I sleep on the affected side or not--I switch all night long but just certain positions of the neck and I can hear the swooshing. I don't notice the tinnitus or my dizziness when I am busy and moving about but I am dizzy when I sit still and am quiet. The only time I hear the tinnitus is when I go to bed and then I really wish I could shut it off. I use to have one of those mood synthesizers that had the sound of the ocean and I thought I might get one again just to create something that is a little more relaxing but has the same tone to it. Do you both feel pressure in your ear? I keep reading that everyone has some problems with their voice being loud and also the snapping noise but I haven't heard anyone say they feel pressure in their ear. When I had my ventilation tube put in it was the strangest feeling like a balloon being punctured. There was an almost instant release of pressure. That felt good after having that full feeling for so long but unfortunately it was short lived and replaced quickly by a feeling of distorted sounds. It just felt like the reverse of PET in that all the sounds were amplified from the outside vs the inside.

hi there! i'm new to the health board. i happened upon this website only yesterday after experiencing this PET syndrome for many years. Over 25 years in fact. So maybe I can be of some help to you. All the symptoms you talk about are very familiar to me.
i have never met anyone else with the symptoms i have to the same degree of discomfort that i experience, that is, until i began reading all the posts. I can sympathize with all of you. And i finally realize that i am not totally alone! I have 2 major problems that have caused me varying degrees of stress over the years- PET and TMJ.

It began a long time ago. I didn't have any ear problems at all until I was 14 years old. I went swimming in a pool that wasn't exactly clean water and ended up with an almighty bad middle ear infection. Twenty Five years ago they didn't have the antibiotics they have today' so I guess the penicillin didn't entirely get rid of the infection and it kept reoccurring and leaving thick 'gluey fluid' in the middle ear. Mainly on the left side. The pain and discomfort of blockage was devastating. Over the next few years I had several sets of grommets put in. The first few helped and then something seemed to happen to my left ear only. My voice started echoing up into my head on the left side. I felt like my ear was blocked all the time and even though i could make it 'pop' I could never get any relief from the blocked sensation! I felt dizzy and spaced out and it was 'really depressing' as no-one else could understand. My ears became very 'noise sensitive' and i found it difficult to tell what direction sound was coming from. The ENT kept trying to inflate my L eustacian tube to try and unblock it. He would thread a long metal tube down through the back of my nose and up into the ETube. It had an inflating bulb on the other end and he would tell me to swallow while he puffed air up into the ETube. This should have unblocked and cleared the ear, however, it used to make me feel extremely nauseous and dizzy. I went back to have this done many times as he said my ETubes were very tiny and they were blocking up. At one stage after I went home I felt a strange sensation in my left sinus- like it was full. I blew my nose and out of the left side came all this gluey thick amber coloured jelly like stuff. Yes, it was yukky! The L ear felt good after this and i thought maybe i'm cured howver the blocked feeling came back within 2 days. I asked the ENT to please put the grommets back in 'cause i couldn't stand the discomfort and didn't know what else to do. It never helped, so I became resigned to the fact that i would haveto live with this. Even though I looked well on the outside people would not realize how tuff it was living with this affliction. Since then I've done a lot of research....

When I look back now I think I may have had a tendency for the PET to happen. When I was 5 years old my sister took me to live pop-concert with all the bands playing - guitars, drums etc. I remember everyone in that hall being able to tolerate the loudness comfortably, however, I began screaming with the pain in my ears and have never forgotten it. My mum had to carry me out as she tried to calm me down.
So maybe I had the beginning of a very silght PET problem there. I would also experience dreadful sinus infections, and an extreme amount of mucous, that none of my friends ever seemed to have. When I was around 8 years old I remember having several teeth extracted and then my jaw began to click. It became very difficult to eat steak etc. So have a think back into your own health history. See if there's anything you can remember that may be related. I think my PET and TMJ began from two separate causes, although I find now when the ear is especially bad all the neck and jaw muscles clench as there is so much tension in the whole area. Anyway, enough from me for now. I have much more to tell but it will become apparent over my next posts. God bless you all. Hang in there! Good luck with your surgery on the 9th Aug, Lib. I will be waiting to hear how you go and wish you all the very best.

hi ccc123,
oh keep telling your story please. i am very interested.
what are all of your symptoms?
i never had ear problems until this, i think i had regular stuff when i was a kid.
how have you coped and managed all this time.
i am having another thumping session in the ear right now, and feel like i am going to go mad.
do you get the thumping also?
lib

Hi Lib and SCP: This is a combo note since I was reading the postings between the two of you. I just wanted to tell you that I am also sensitive to loud noises. Certain things bother me more than others--the sound of a spoon stirring sugar into a glass seems so intense and female singers vs male--seems to be more uncomfortable in the high ranges. I have gotten to a point that if I go to a movie I wear earplugs because they crank up the volume so much. I can hear the movie fine with two earplugs in but can't hear much of anything if a friend asks me a question. They know to wait until we leave the theatre and actually get back into the car where it is quiet. I went to a musical recently and fortunately I carry my earplugs with me all the time now. As soon as the female lead broke into her song I was scrambling for the earplugs. I am sure that creates some curious looks from others. TV and things around the house don't seem to bother me but when I am in a restaurant it seems that there are so many noises and that is part of the reason it bothers me. Glad to see that you are back with us SCP. I missed getting a hold of Poe today but will try next week. You also mentioned the cracking sound is audible to others--that is amazing--no wonder it drives you nuts. I don't have that but I have noticed that I have tinnitus and at night when I sleep I sometimes have to find a position where my ear isn't acting like an amplifier and picking up my heart sounds--it is loud enough to keep me awake. Doesn't seem to matter if I sleep on the affected side or not--I switch all night long but just certain positions of the neck and I can hear the swooshing. I don't notice the tinnitus or my dizziness when I am busy and moving about but I am dizzy when I sit still and am quiet. The only time I hear the tinnitus is when I go to bed and then I really wish I could shut it off. I use to have one of those mood synthesizers that had the sound of the ocean and I thought I might get one again just to create something that is a little more relaxing but has the same tone to it. Do you both feel pressure in your ear? I keep reading that everyone has some problems with their voice being loud and also the snapping noise but I haven't heard anyone say they feel pressure in their ear. When I had my ventilation tube put in it was the strangest feeling like a balloon being punctured. There was an almost instant release of pressure. That felt good after having that full feeling for so long but unfortunately it was short lived and replaced quickly by a feeling of distorted sounds. It just felt like the reverse of PET in that all the sounds were amplified from the outside vs the inside.
hi petpeeve,
yes pressure is terrible, swallowing makes it much worse, ooh how i hate this.
wondering if any one has swam under water with this condition, we have a pool and i was always in until this summer to depressed and afraid of what it may feel like if i go under.
i am to afraid to try the vent tubes i certainley dont want to make matters worse.
well the count down is on....10 days...i am terrified...never had surgery before, asking everyone for good thoughts and prayers.
lib

Hi ccc123---welcome and thanks for your feedback--25 years--oh my gosh--I worry that I will have to cope with this for the rest of my life--sure has made an impact on it already and lessened the social interaction

I wanted to ask you a question because I am confused about whether or not you have PET or ETD. You said that your voice started echoing and that your ear felt blocked all the time. you also mentioned feeling dizzy and spaced out. You also said you were noise sensitive. Those are all the same things I experience but I wonder if we don't actually have the opposite problems but just the same symptoms. You said the ENT kept trying to inflate your ET and unblock it but with PET it isn't blocked--it is stuck in the open position and all the treatments aim at blocking it or closing it. And also the PET condition is dry--no fluid buildup or glue ear like they call it. Did your doctor ever give you a specific diagnosis? It is confusing for patients when several ENT doctors have opposite advice but I guess it is confusing to doctors too since the symptoms sometimes are similar. But I thought doctors could look in the ear and tell if there was fluid behind the eardrum. I had several ENT's look in my ear and say there was no fluid buildup or redness from infection and yet one suggested decongestants and the other said absolutely not. One said ventilation tubes would help and the other said it wouldn't do anything. What have you tried as far as treatments in your 25 years and does it affect your speech? I find the autophony makes my own voice so loud that I limit myself to a whisper or very close conversation with one person. Since you have had PET or ETD for 25 years I hope you will share some of your coping strategies with the rest of us. Have you ever had a cat scan or MRI. I think you mentioned the doctor looking at your ET with a scope so he must have seen they were blocked. I had the endoscope test several times and the doctor always said the ET was floppy or wide open and not shut like it should be normally. Send suggestions.

Hi lib, hi petpeeve,great to hear from you. I think this forum is a really great idea and it is sooooo comforting to be able to share the symptoms that we have in common. Who knows maybe we will all find the answer to it together.
When I had the middle ear infections as a teenager, the antibiotics were not completely clearing the infection and this would keep reoccurring, I then would try course aftrer course of other antibiotics but the bugs probably became resistant to them as maybe each course was too short. I also lost a stone in weight due to the stress of never feeling well and was depressed. Fluid would be left behind after each infection and i think my ET tubes became chronically inflamed setting up the way for ETD.The grommets tubes initially helped. I had them under GA (I chose this option rather than without GA). It was quite OK having he tubes, although I needed a few days off work as it made me feel a bit giddy. That settled down. However, the fliud would come back and then I would need them again. In between times when I didn't have the tubes the ENT would inflate my Left ET tube only and not the right(as previously mentioned) and told me to keep doing valsalver's technique(where you hold the nose and blow). This became extremely uncomfortable as I would hear the fluid stick, gurgle and squelch. However, many times he would say he couldn't see any fluid and I couldn't figure out where the poppping and squelching noises were coming from!It was very disturbing and I used to cry a lot. I also then made the decision that I would haveto swap to only working part-time. I was 21 at this stage. The ENT would tell me that my prob was very unusual and that this usually only happened to children as their ET tubes are shorter and narrower and therefore prone to blocking. However I think he used to help me cope by saying after each weekly appt, 'Don't worry, we're going to get you better! I would go away thinking, perhaps this nightmare will come to an end oneday so that I can get on with my life and I'll find out what is causing it. There were definitely no infections there, and I was having to deal with more and more discomfort with my voice echiong in my head when I spoke.Socially, I would findthis very difficult. I also lost weight again (about 20lbs) and was very thin. However, I did meet the man (who is still my husband) and after some time I was able to share this story with him. Although he would never fully understand what I was going through he would always be there to support me. We're still together after 20 years-(I will say how we coped another time).
One night I was so uncomfortable with my ear. Difficulty sleeping again. Pulsating, rushing noise, feeling anxious, hearing muffled, dizziness, voice echoing uncomfotably louder than usual. I tried to inflate my ET tubes holding my nose and this very loud noise felt like the air was going strongly up into my ear. My eardrum felt 'saggy' and it kept popping and make other noises. I said to my husband I'm very worried put your ear next to mine and i'll bet you can hear this noise. He could and loudly. He said don't hold your nose and blow anymore or you may do some damage. This frightened me. It was then i decided to research the problem myself. No internet 2o years ago, so went to the library of a major teaching hospital and spent a couple of days pouring through journals and books(I had had 1st baby at this stage and symptoms exacerbated).

There it was in a journal- all my symptoms- how could this be! Ihad seen 4 ENT docs by this time and no-one had mentioned PET. My theory is that I went from having ETD where the ET tube was intermittently patulous and due to the forcing of my ETube open by the ENT stretched the ET tube and made it floppy. Also the losing and gaining of weight was a contributing factor. Also I think oestrogen levels in my body were high as I had been using contraceptive pill on and off for eight yrs.TMJ was also emerging as a bigger and bigger prob, and I'm sure it was due to the stress as i would clench with the
discomfort (more on TMJ treatment later).
Went to another ENT and told him my story. He wanted to rule out tumours etc so he did a cat scan. All clear! (I'm 30 yrs old at this stage). Did a nasal endoscopy and observed the opening and closing of L Etube while i said certain letters of the alphabet.He said this was OK. He had never made a diagnosis of PET before so he got the audiometrist to do some pressure tests because I said i could Feel the air going right up into my ear when I was breathing. Bingo! PET diagnosis based on this and my detailed description of the disturbing symptoms. Internet had just come into use by doc's so together we looked up possible treatments. He said to me 'can you live with this syndrome?' I said 'well I am, aren't I but life could be a whole lot better!'
There were some possible treatments. Grommets - I already tried this after the ear had turned patulous but it made made the echoing worse in the end (apparently they help some people with PET- it's a very simple op and one I would try first. Only helped me at start with fliud).
The Eustacian tube catheter, pioneered by I think, Prof Bluestone was another possibility (this ENT had never done this op before).
Last option was injection of dissolvable Gelfoam into base of opening of ETube. I opted for this as it was reversible and would desolve in 6 weeks. I probably wouln't have that again as it felt uncomfortable. It desolved and i was back to square one. Decided not to go ahead with Bluestone's catheter until I heard more about it or if they invented something else.
ENT suggested I try and put on weight and see if this would alleviate symptoms. This was not the most appealing idea! Although, after having a second baby an extra 10 kilos remained with me. Something strange! The symptoms were more tolerable on some days. I had days where it was not as disturbing. It didn't completely feel better but it was a bit more tolerable. Also no more attempting valsalver technique as it will only stretch ETube more. I have kept this weight on for last 10 years and everything going pretty OK! Didn't have to think about the symptoms quite as much.
However, got a bad sinus infection 6 months ago and it travelled straight up int my middle ear. Took double course of Augmentin tabs. The symptoms are now bad again. I am looking for a solution. Heard about 'patulend' drops. Looked up internet and found link to this healthboard (which is wonderful). I saw another ENT a couple of months ago and he has referred me to a professor who only treats ears. I'll see him in 6 weeks time. Until next time, I still have more to tell. Bye

oh.....do tell more i love all of this, but please tell us how you and your husband coped with this, we are having a terrible time. thanks lib

dear lib, when the ENT doc did the audiometry tests to see if my ETubes were overly patent or patulous he told me that both of them were. This was also confirmed by 2 more ENT specialists after that. However, even though they both tested positive for PET the L ear is extremely more symptomatic and bothersome than the right. So I myself feel that the L ear is really wide open. When I move my head up and down there is a clicking, snapping squelching noise that I presume is the ETube with air trapped in it. At the moment it feels really uncomfortable and 'swollen'. If I press hard behind my L jawline it is the same noise like I am trying to push the ETube closed, but this is never possible. This would have to be the one thing that husband has especially noticed me doing over the years and then he says to me, your ear is giving you a lot of trouble today isn't it? He also observes that I tend to get puffy around the eyes and unfortunately it also made me extremely irritable, frustrated and feeling shakey and nervous. I will get the occasional day at the moment where it is not quite so bothersome but I can never predict when this will be. I think rainy damp days seem to be better when there is a lot of moisture in the air. Also it tends to feel a bit better if I am getting a cold or have successive bouts of sneezing. This irritates the ETube and temporarily makes it swell a little. I really feel for you as you have it in both ears. Is it as bad in each ear or is one better than the other? I heard of somene on a different forum inhaling finely ground pepper! I was so desperate the other day, 'cause I had to entertain some visitors that I thought I would give it a go!I thought how to administer this ? I put some on a teaspoon and gave three large sniffs in. At first, not too bad so I'll do a bit more and make sure that as much pepper goes in as possible. For a couple of minutes not too bad and then the burning! Wow it was certainly right at the back of the nose. I did experience some initial sneezing- but this was OK- and burning. THe area certainly would have been inflamed and may have caused the tube to close a little. I mentioned to my husband what I had done as he commented that my nose looked very sore on oneside! I don't think he thought it was such a great idea but when I was in such unrelenting discomfort anything is worth a try to see if it works. I have not mentioned this one to the ENT! On a number of occasions I have used the irritant drops they prescribe. Have you tried these? The ones the chemist makes from the ENT doc's script is 'dextrose in glycerol'. My ENT wants me to try these again before I go and see the prof in August. The drops are quite thick, however, and make me feel a bit nauseated. I don't like using these. I guess the best way I have found to cope over the years is to try and modify my lifestyle. This syndrome often leaves me feeling very fatigued- muffled hearing, high pitched tinnitus and constant discomfort of feeling like my ETube is swollen or even a funny tiklish feeling. It's really a strange situation as other people have no idea how you are experiencing this. Also I find having to talk causes the resonating and vibratory effect and I can't hear my own voice properly especially in background noise. THis has caused me to be hesitant about going to social occasions as it proves embarrassing if I am talking too soft or too loud! I'll quite often say to my husband 'you'll haveto tell me if my voice is too loud or soft so I can adjust it'. My ear is extremely sensitive to loud noise. Unfortunately my husband is a 'music nut' and likes nothing better than to drive with the music right up high or listen to it at home at 'top volume'! This is problem as i haveto ask him to turn it down all the time and play it loud when I'm not around.I have a lot of hobbies that I like to pursue at home and have joined group activities outside home where I don't haveto talk a lot. My hubby is pretty patient with it all and says to tell him if I am having a really bad day. I enjoy company so this has had a big effect on my life. My kids are old enough now that I am trying to get them to understand.For most other people i always tend to tell them i have a hearing problem. My speech is often hard to understand and people will ask me to repeat things. This can be annoying.Also when i talk people will often say I have a 'husky little voice'. Do people say your voice sounds different lib? Bye now.

dear lib, when the ENT doc did the audiometry tests to see if my ETubes were overly patent or patulous he told me that both of them were. This was also confirmed by 2 more ENT specialists after that. However, even though they both tested positive for PET the L ear is extremely more symptomatic and bothersome than the right. So I myself feel that the L ear is really wide open. When I move my head up and down there is a clicking, snapping squelching noise that I presume is the ETube with air trapped in it. At the moment it feels really uncomfortable and 'swollen'. If I press hard behind my L jawline it is the same noise like I am trying to push the ETube closed, but this is never possible. This would have to be the one thing that husband has especially noticed me doing over the years and then he says to me, your ear is giving you a lot of trouble today isn't it? He also observes that I tend to get puffy around the eyes and unfortunately it also made me extremely irritable, frustrated and feeling shakey and nervous. I will get the occasional day at the moment where it is not quite so bothersome but I can never predict when this will be. I think rainy damp days seem to be better when there is a lot of moisture in the air. Also it tends to feel a bit better if I am getting a cold or have successive bouts of sneezing. This irritates the ETube and temporarily makes it swell a little. I really feel for you as you have it in both ears. Is it as bad in each ear or is one better than the other? I heard of somene on a different forum inhaling finely ground pepper! I was so desperate the other day, 'cause I had to entertain some visitors that I thought I would give it a go!I thought how to administer this ? I put some on a teaspoon and gave three large sniffs in. At first, not too bad so I'll do a bit more and make sure that as much pepper goes in as possible. For a couple of minutes not too bad and then the burning! Wow it was certainly right at the back of the nose. I did experience some initial sneezing- but this was OK- and burning. THe area certainly would have been inflamed and may have caused the tube to close a little. I mentioned to my husband what I had done as he commented that my nose looked very sore on oneside! I don't think he thought it was such a great idea but when I was in such unrelenting discomfort anything is worth a try to see if it works. I have not mentioned this one to the ENT! On a number of occasions I have used the irritant drops they prescribe. Have you tried these? The ones the chemist makes from the ENT doc's script is 'dextrose in glycerol'. My ENT wants me to try these again before I go and see the prof in August. The drops are quite thick, however, and make me feel a bit nauseated. I don't like using these. I guess the best way I have found to cope over the years is to try and modify my lifestyle. This syndrome often leaves me feeling very fatigued- muffled hearing, high pitched tinnitus and constant discomfort of feeling like my ETube is swollen or even a funny tiklish feeling. It's really a strange situation as other people have no idea how you are experiencing this. Also I find having to talk causes the resonating and vibratory effect and I can't hear my own voice properly especially in background noise. THis has caused me to be hesitant about going to social occasions as it proves embarrassing if I am talking too soft or too loud! I'll quite often say to my husband 'you'll haveto tell me if my voice is too loud or soft so I can adjust it'. My ear is extremely sensitive to loud noise. Unfortunately my husband is a 'music nut' and likes nothing better than to drive with the music right up high or listen to it at home at 'top volume'! This is problem as i haveto ask him to turn it down all the time and play it loud when I'm not around.I have a lot of hobbies that I like to pursue at home and have joined group activities outside home where I don't haveto talk a lot. My hubby is pretty patient with it all and says to tell him if I am having a really bad day. I enjoy company so this has had a big effect on my life. My kids are old enough now that I am trying to get them to understand.For most other people i always tend to tell them i have a hearing problem. My speech is often hard to understand and people will ask me to repeat things. This can be annoying.Also when i talk people will often say I have a 'husky little voice'. Do people say your voice sounds different lib? Bye now.
hi ccc123,
no one has said anything about my voice, but i dont talk as loud becaue its so disturbing. i hate hearing and feeling my eardrums move in and out.
both ears are about the same the right one is a little worse and i have a snapping sound that comes from behind my nose its aweful.
i did try the hormone nose drops but they did not help at all.
yes i get irratable and shakey, i am severley depressed. i am having surgery next monday by a dr in boston so i pray this is the answer to this problem, its very expensive to travel there but i dont think i can live like this much longer. i will also consider closeing them, were you asleep for the injection or did they do it while you were awake?where was that done? where do you live?
thanks lib
also the bluestone method, would you have to have grommets with that?
do you or did you work through all of this?

Hi Lib: checking in to see what the fellow PET sufferers are doing seems to be a daily ritual now. It is nice to know that someone else wakes up with the same problem each day although I hate to see anyone else suffer with this. It will be nice after your surgery if you can wake up and not feel pressure in your ears. I notice when I get up that the pressure comes back almost instantly. I never seem to feel much relief when putting my head down and if it improves while sleeping I am not awake to enjoy it. It comes back as soon as i get up. Do you have any period of relief early in the morning or any relief when putting your head between your legs?

You mentioned that you have terrible ear pressure too and that it is worse when you swallow. I don't experience that. I don't get any relief from swallowing or yawning like a normal person/normal ET would feel but I don't feel the pressure go up when I swallow. I hear a click when I swallow or yawn but no pressure change.

As far as swimming there is some evidence that it helps because of the chlorinated water. I think the premise of the premarin nose spray and the fda clinical drug study is to administer something that causes swelling of the ET. In one of the PUBMED articles I read, I believe it was there, a case was cited where a man with PET had observed some relief when swimming in chlorinated water frequently and that is how some of the studies got started. I have a pool and didn't try it last year because I didn't want to do it at the same time that I was doing the Santa Barbara drug study but will give it a shot this summer. As far as swimming I have done it since having the PET--not enough to test whether the chlorinated water would help but enough to know that swimming didn't bother my ear at all. going under the water didn't bother my ear at all. I routinely go under the water when I am in the tub every night. I do that when I am washing my hair and I don't feel any discomfort then or afterwards.

As far as your surgery--since you will have the IV anesthesia instead of general gas--you will probably not remember a thing. I had the IV anesthesia before for some other kind of surgery and all I remember is the the IV needle in my arm being started which was easy and then waking up an hour later. Sometimes they even give you a little nitrous oxide (laughing gas) through a mask before they start the IV--that makes you feel happy and relaxed. Try not to worry-- I am sure that Dr. Poe from all the things you have said about him being considerate and a good listener is planning to make you unaware and out for the whole procedure. IV anesthesia is actuallly easier on your body than the general anyway.

You mentioned that vent tubes are probably not needed for the alloderm transplant surgery unless they overcompensate but if they need to put some vent tubes in ask Dr. Poe about the different kinds. My ENT had told me there were all sorts of sizes from small to large and the larger the more likely scar tissue would form. My doctor opted to put in a cone shaped tube that is the smallest available and used primarily in children. he said it was the one that caused the least amount of cutting in the eardrum and thus less scar tissue. It is also the kind that comes out on its own without you even being aware of it in about 3 months. I actuallly had to go in and have him check to see if it had fallen out because I couldnt' tell whether it was in or not. I wanted to be sure before I started swimming again. The tube didn't help me anyway but that is because it should never have been probably tried anyway. From what I have read the tubes are only used in PET patients who have that horrible sensation of hearing every breath in and out and the feeling that their eardrum is moving. In those cases the vent tube helps equalize pressure and does help. I didn't have that symptom at the time so it was not indicated but ...... I had that symptom in the past and that would have been the time to put the tubes in. You said you have some of that sound on your eardrum --is that correct? You might be a good candidate but since you are having the alloderm transplant you probably won't even need it. I read ssc123's note about some sort of operation with a disolvable material--haven't heard of that--will have to ask her more. I did all sorts of searches on alloderm transplants but everything is about cosmetic surgery. Any hints for where I can find more info--maybe Poe's office can send me some handout. I did searches on alloderm implants for ET and all sorts of other wordings but almost everything was cosmetic related. So the cadaver tissue implant must be yet another form of sealing up the ET

Did you say that nathan had the same surgery as you with Dr Poe and had complete disappearance of his PET? I searched on his name and read all his notes and he talks about having the procedure done but I couldn't find anything specific where he said it had reversed the PET. He mentioned that he had the spasms and then botox injections in the roof of his mouth ? and then the PET came and Dr. Poe fixed it. I will keep searching.

I am not working right now. It would be hard to do what I used to do--any job with people and talking would be difficult. Seems like the best work with this kind of condition is something where you are in a room by yourself and no talking involved and the ability to keep the room quiet and no music. That could be limiting.

Your big day is coming and I am sure all of us actively checking into the boards here will be thinking of you and keeping you in our prayers for a complete recovery. It would be so exciting and encouraging to get notes from you on how you are doing all sorts of social and talking things!!!! PP

Hi cc123--its petpeeve---I laughed when I heard about your pepper experiment not only because it was funny but because I have been so desperate to find a way to cure or reduce the symptoms of PET that I said I was going to invent my own concoction. After reading all the medical journal articles about what research is being done I found that the ingredients all have the common goal of causing irritation and therefore swelling of the ET. Pepper sounds like it would work as well as the chlorine that has been used. I figured every time I ate sushi and had that green horseradish, wasabi that it burned and caused congestion in my throat so why not my nose. I figured I could whip up some horseradish spray and sniff it in--afterall we eat it so it can't be anymore dangerous than the other experimental things we are stuffing up our noses. I used to think people were ridiculous to resorting to anything to try to find a cure but once we are afflicted ourselves we start to understand that desperation. Let me know if your pepper works-haha I also have not told my ENT about this but I will be the first to share it with any of you if it works!! If it wasn't for the indigestion I would try more spicy food to see if it would affect the ET.

I never heard of the 'dextrose in glycerol' drops-- I have taken the premarin and the PIMA (potassium iodiode immersion) and the FDA drug study drops from the Ear Foundation in Santa Barbara. No improvement with any of them unfortunately. But I would recommend them all just because you never know what will work for you. If you want to see what other things I have tried go back and click on petpeeve and there is a way you can pull up all of my posts together. You said you were new to the boards so I wasn't sure if you discovered how to do that yet. That really helps sometimes to follow what one person is saying--I did that with both you and lib because we all seem to be pretty active in our posts. Get a good cup of tea when you read lib's posts--she is a veteran and has a lot of them. Let's hope after her surgery she is posting she is leaving us and has joined the ranks of the normal ET people.

You mentioned feeling fatigued and I often do too. I start the day out with pressure and it is there at the end of the day too. Even though I don't have any physical pain I think the constant fullness and ear stuffiness wears me down. I don't have muffled hearing--so far my hearing tests are very good. I do have the high pitched tinnitus and I can hear a high pitched sound if I press on the neck area below my ear--sounds just like that high pitch you hear during a hearing test.

I also have that feeling of not being aware of my voice and how it sounds in a group setting. I am more aware of the volume I am projecting if I am at home and it is a quiet environment. But when I am out in a public setting I sometimes talk too soft or too loud. My husband asked me why I would speak too loud if speaking is actually uncomfortable and the only answer i could really provide is that it all sounds the same--if I speak softly it is too loud in my head and if I speak at a normal or loud level it is still too much noise in my own head--I can't really tell the difference except that peole are not saying "what--can you say that again?" The only thing that is comfortable is if I whisper at a very soft and kind of unvibrating level but that is too soft for anyone to hear.

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